My Nonprofit Reviews
Joanna
Review for The Oral Cancer Foundation, Santa Fe, NM, USA
When I found a tumor in my mouth, I made a doctor’s appointment, then went online. What I found was doom and gloom and made me think I should not renew magazine subscriptions or make plans for Christmas. When I finally found the Oral Cancer Foundation, it was like a breath of fresh air. In addition to finding a LOT of calming, factual information, I discovered the forum, where I could read about real-life experiences. I could breath again. As I began treatment, every question I posted was answered. What could have been a long, scary summer was instead a Grand Adventure as I went into each new procedure completely briefed as to what I could expect. As an example of the type of information provided on the forum, at one point I very casually mentioned a transitory change in my hearing. One member told me that the chemo I was receiving will cause a very small percentage of patients extreme hearing loss. I took this information to the medical oncologist at my next visit, and he immediately changed the drugs I was receiving. Without the help from the people I met on the Oral Cancer Foundation forum, I would now be deaf as a post. That is a very powerful and important source of information for oral cancer patients and their families! In the nearly eight years since I first logged on, the site has grown exponentially, providing up-to-date information and via the forum, emotional support as well. The people who work behind the scenes to make this happen are heros in every sense of the word. I, alone, benefitted by absolutely current and correct information, the support I received on the forum, and the wonderful friends I have made there with whom I will always share a common bond. When I consider how many, many other patients, family members and friends of patients have similarly made use of this fantastic resource, I realize how extremely valuable the Oral Cancer Foundation is.
More Feedback
I've personally experienced the results of this organization in...
the people who log onto the patient forum very, very scared, who are welcome by others who have lived through treatment, given information, and who then are able to face their own treatment with a good deal more confidence.
If I had to make changes to this organization, I would...
be extremely proud of all I mave accomplished.
What I've enjoyed the most about my experience with this nonprofit is...
the current information available.
The kinds of staff and volunteers that I met were...
Nearly every member of the patient forum is a volunteer in the sense that they share information and experience with others. Over the ears, I interacted with many of these volunteers.
If this organization had 10 million bucks, it could...
it could fund PSA's, and in so many ways make oral cancer, and the prevention of same, far more visible to the general public.
Ways to make it better...
I cannot imagine how I could have been helped more!
In my opinion, the biggest challenges facing this organization are...
Funding, funding, and funding.
One thing I'd also say is that...
without the resource of the Oral Cancer Foundation, I would not have known what treatment options to discuss with my physicians, and as I wrote in my reviw, would be quite deaf.
When was your last experience with this nonprofit?
2009
